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Update on Jack...warning...long and full of poor me's

okthen's picture
okthen
Posts: 232
Joined: Jun 2010

Hi Everyone! Just thought I would try again to update on Jack...couldn't get on the other night..got "Server Busy" signal...then few nights later wrote a long blubbering post that I guess I accidentally poofed away...so anyway..

Jack had chemo last Tuesday (5 fu) I stayed and waited for Oncs nurse to ask if we could go ahead and run the cal/mag just to see if it would help his arm pain and neuropathy.
He feels worse after this last chemo than ever...even when he was on Folfox.

I have been so sick that when he went for disconnect I slept right through him leaving and coming home. He said Nurse told him that onc said cal/mag wouldn't help and that he should take B-6. Maybe I'm stupid, but he had no neuropathy or arm pain when he was getting the cal/mag, why not just give it a try?? Jack couldn't remember how much B-6 she said to take, I meant to call her today, but again, to damn sick to get on the phone.

My friends husband is a physician, he told Jack to take 1500 of D, that it would work better...any thoughts here? I like Dr."friends husband", but he's not an Onc, i would trust ya'lls experience more than his word, and would of course clear it with Jacks Onc before doing anything different.

Jack, again, is saying "enough". I don't know what to do. I promised myself I wouldn't let him stop his treatments this time, if I had pushed him with the first treatments (not chemo, surgery) maybe we would have never been in this position the 2nd time. I guess there's nothing I can do, it's up to him.

I have been feeling so bad, I can't fight about it anymore....I just feel like he is making the wrong decision. Yes, it is his life, but I feel like he had an opportunity that he pushed away, then it (cancer) came back and he still had a good opportunity to beat this at stage 3 with only 1 positive node. I am sorry, but I feel that he owes it to me and our children to do everything, EVERYTHING, to beat this.

Maybe he already has beat it, I pray he's already beat it.

I just can't do this anymore. I am so tired of begging and calling and paying and explaining...and crying, hurting, fighting....I applied for help with the Healthwell foundation in Nov. Every Time I call I get the same story, your application is being reviewed. Good god. The way I understand it is if they do ever decide to help, they will only help while he is in active treatment, and I assume that means chemo...so if he's done, like he says, months of anguish trying to get his application complete and reviewed is for nothing.

I just feel so "done" .....I can't do anything except go get pain pills because I have no health insurance...I finally was denied Medicaid in Feb after applying in July of last year. I have no money for insurance for me and the kids...and there doesn't seem to be a thing out there to help.

I can't be out of bed more than an hour or two before I'm laying in bed in pain again. I am so nauseous....thought it was from the pain meds but even when I don't take them I feel like my base of my head is going to explode and there is such a pressure between my shoulder blades...I just feel like vomiting. Not eating much but have gained ten pounds, trouble urinating...over all flu feeling and the most annoying twisting organ feeling in my right flank that I want to get a knife and cut out whatever it is.

Docs say they've looked at, and removed, everything they can. Mentioned a bone scan and looking at my kidney then remembered "no insurance" and told me to come back in Feb. I didn't go, its almost 200 to see him...maybe this month.

I shouldn't be on here crying about myself, but it's all connected to being able to be there to support my husband who I know feels just as bad physically if not a hundred times worse than I do.

Thanks for listening, and I know you all have always welcomed whatever someone needs to vent about and for that, this board and all that are on it are forever in my heart.

The only thing I got out of watching the Oscars last night was the quote that they showed form Lena Horne...I probably have it wrong but it was something like " It's not the burden that brings you down, but the way you carry it. "

I'm not proud of how I'm carrying our burdens lately, I need to figure out a way to do better. I just really feel like I can't anymore...I'm trying, I promise, I'm trying.

Love2Cats's picture
Love2Cats
Posts: 127
Joined: Dec 2010

You have a lot going on in your lives. It is good that you came to share your story, you need some relief from all the pressure you are under. I can see that you are trying very hard to hold everything together, you are much stronger than you give yourself credit for. I am sending positive thoughts and wishes your way.

Also, I found some organic ginger cookies on Amazon.com, that seem to have really helped me with my nausea this round of chemo. This is only my 3rd treatment, but I got really nauseous the last 2 times, and this time I ate a bunch of these cookies the night before, and I am not nauseous this time. Since everything is so new, I can't say that with 100% certainty that it is the cookies, but there was a huge difference with the nausea this time. The cookies are by "Country Choice" brand, and they are "organic snacking ginger snaps". They taste pretty darn good too.

Sandy

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Lori-S's picture
Lori-S
Posts: 1286
Joined: Sep 2010

HUGS! Vent away as it is therapeutic. I know how seriously you take your caregiving and how much you love Jack. I am so sorry that you have had such a long and winding road with his treatments and all the personal home stuff too. Try to make sure that you care give to yourself too. You need just as much loving as Jack does because you guys are on this journey together. I am so glad that you came to post these things. I wish I could fix it all for you. In the meantime ... HUGS, HUGS, HUGS.

Crow71's picture
Crow71
Posts: 681
Joined: Jan 2010

Like Lori said, I wish I could fix this. We all experience ups and downs, but as you said, maybe he has beaten this. That's the most important up. I hope that you can get yourself well, find some peace, and give yourself a break. So many things here are not your fault. You do just fine carrying your burdens.

Roger

Lovekitties's picture
Lovekitties
Posts: 3372
Joined: Jan 2010

Dear, we each have our times of feeling less than adequate to the tasks given us. Don't dispair. Each time you think you can't deal with it another minute, believe that there are wings coming from each of us here to lift you up and give you just a bit more energy and faith that you can go on.

Take care of yourself.

Hugs,

Marie who loves kitties

AnneCan
Posts: 3692
Joined: Oct 2009

It sounds like you have more than your plate full. I din't realize that you are so sick too. I hope you will get the medical attention you need. I am so sorry both of you are hurting. Warm hugs are wrapping around you. I like that quote from the Oscars as well.

okthen's picture
okthen
Posts: 232
Joined: Jun 2010

Thanks everyone for being there for me....

I logged in to thank you for your replies about 3 hours ago and was interrupted with a call from the social worker at our cancer center.

Healthwell foundation rejected our application because they have run out of funds.

If I weren't crying so hard I would laugh.

There doesn't seem to be one darn thing, place, foundation or whatever that can help us. I just absolutely don't get it.

The cancer center social worker told me not to give up, that she is going to find something...I don't think she can, I think Healthwell kept us on hold so long that we will be out of the time frame for most co-pay programs...the ones I've seen have been for 60 days back...we are past that.
I think she's done all she can do, but I appreciate her trying.

Jack is still saying no more chemo....that his quality of life stinks and he is done. We'll see..we've definitely had this conversation before, so we'll see what happens when he tells his Onc.

I am filling out an application for health insurance, with my last 2 years of medical issues not sure what will happen...scared to death to get one more rejection or ridiculous premium...but have to do something...I think my parents will help me pay the premium...I just really hoped Healthwell would come through and I wouldn't have to ask...

I want to respond to each of you and let you know that I care very much that you took the time to respond, but right now I'm wallowing in the "not fair, this sucks, why us..etc" so please just know that I appreciate you all so much.

You're really my lifeline right now...trying to keep all this away from Jack, he doesn't need the stress of watching me cry.

I know this is not a religion chat board...but today it came to mind that maybe, even though I thought I knew what it meant, I am going to find out what it really means to "give it to God".

Right now, I think I will go hug my husband...shoot, maybe I'll even kiss him. (o:
No more crying for me today....Im going to try to spend the rest of the day as if none of this is happening.

Love to you all!

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

Your doctor friend has a cupboard full of sample drugs. If you need something you should ask him, something for the pain, something to sleep so you can rest. I'm so sorry you are going through this. What State do you live in?

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